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Does it always get worse?

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  • #31
    Re: Does it always get worse?

    Hi Karabie,

    Congratulations on your pregnancy!

    Yes, just like you on reflection I have had IC symptoms on and off since my teens but it - as you say, turned chronic after my 1st pregnancy. Frequency is the least of my problems now I go 5 times a day but I still get urges sometimes. I have worked out that on medication I start feeling the need to go at 150ml and can easily hold it to 300ml. Time is not a factor I can hold it for hours if capacity is less than 300ml. For me it's all about the amount in the bladder - even when I flare. I flare about 1x per month and I get pain and stinging after peeing this can last for a few days. The medication started working for me after 3 months of being back on it. The medication ensures I get less flares and have no feeling in my bladder until it hits 150ml even then it isn't bad until 300ml.
    Diagnosed by cystoscopy Dec 2012 after 1st baby
    Was doing well, had 2nd baby and enjoyed 4 months of remission with breastfeeding, I ate everything, it was great!
    IC came back in July 2014, have been stable again for 2 years.
    I am now struggling badly with IBS-D.

    What seems to help me:
    Elmiron 3x per day.
    Cimetidine - no longer take this, it may have contributed to GI problems
    DH Aloe
    Cornsilk - Drink this as a tea occasionally
    Diet and prelief - although i'm not very diet sensitive I still stick to a friendly diet and when I do eat something iffy I take prelief and have very little problems, I rarely flare with food.
    Amitryptaline
    Probiotics, I am not taking these right now due to GI issues
    Lots of water
    Heat
    Panadol (I think this is Tylenol in the States)
    Sleep

    Comment


    • #32
      Re: Does it always get worse?

      Really? How does holding it not drive you crazy? I can also hold it but it's so uncomfortable and distracting. I only feel relief when my bladder is empty. Sometimes this lasts for 1 hour, sometimes 2. I'm guessing the Elmiron makes it less irritating? Do you follow the diet?

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      • #33
        Re: Does it always get worse?

        I do avoid stuff like tomatoes, chocolate and citrus and I know I will never drink coffee again but I have never been that diet sensitive and could never determine what foods bothered me. Holding it isn't bad for me, I guess you are right, the elmiron makes it less irritating. By 300-400 I am very uncomfortable though, I have OAB as well and the urge gets crazy, sometimes I almost loose control and pee myself. Sometimes if I am really distracted by TV or something I can make it to 500ml.
        Diagnosed by cystoscopy Dec 2012 after 1st baby
        Was doing well, had 2nd baby and enjoyed 4 months of remission with breastfeeding, I ate everything, it was great!
        IC came back in July 2014, have been stable again for 2 years.
        I am now struggling badly with IBS-D.

        What seems to help me:
        Elmiron 3x per day.
        Cimetidine - no longer take this, it may have contributed to GI problems
        DH Aloe
        Cornsilk - Drink this as a tea occasionally
        Diet and prelief - although i'm not very diet sensitive I still stick to a friendly diet and when I do eat something iffy I take prelief and have very little problems, I rarely flare with food.
        Amitryptaline
        Probiotics, I am not taking these right now due to GI issues
        Lots of water
        Heat
        Panadol (I think this is Tylenol in the States)
        Sleep

        Comment


        • #34
          Re: Does it always get worse?

          I sometimes wonder if I don't have OAB as well since I sometimes just seem to "leak" constantly. Not a ton but enough to notice. Gross. I know I can't take OAB meds during pregnancy for sure, but I've been on Myrbetriq for the past 5 weeks and it seemed to have started working a bit. They say it takes 7 weeks to notice the real difference.

          It seems like you have a real handle on your symptoms and are able to really enjoy your life in spite of IC.
          Us IC moms have to be tough!
          Thanks for sharing!

          Comment


          • #35
            Re: Does it always get worse?

            Thank you so much everyone who posted!!!

            I do feel a little better, it is nice to know that things can work out and be fine...although I know lots of us have a new normal... ( I know I do!) it seems like a vast majority of us have found ways to keep IC in check and carry on with the positive parts in life. I like to think of it as a condition, and NOT a disease, in fact I NEVER consider it to be that. I look at is something that is a little off with my bladder, who gets cranky, but quietens down with the right support lol...

            Congrats on your pregnancy Karabie! I hope things turn out well for you! Please keep me updated! I would love to know how you do! Of course I wish you REMISSION or at least very manageable symptoms! How exciting

            Sylvieamber, I am so glad that I was able to give you hope! It feels like a long time that I have been coming back and forth on to these boards... I was helped by quite a few women when I first came on here! VM and Massagedoula were ones that pop in to my mind, but honestly there were SO many that helped to raise my spirits, and I always wanted to be like them... so I vowed that when I was doing ok, I would still come back to the boards and give hope.. something that I have continued to do

            I feel like lately I have been such a basket case trying to soak up anything I can find that could give me a clear picture about what I am in for! I know we are all different...and we all have IC from different origins, but quite a few of us seem to have very similar symptoms, especially related to hormones. I only flare when I ovulate generally now, or when I drink alcohol. I feel great when I am on my period and I feel great when I am coming off my period on to the two weeks before I ovulate. My bladder always usually feels fine now, but I can tell you that the first week after my period my bladder is SO happy. I think that is when your body has the highest estrogen? Seems like my body likes estrogen? No idea really. Pregnancy hormones scare me, that is all I have to say... hehe.

            Everything I have read it mostly says that the first trimester is hard.. and that I expect.. (especially from the increase of HCG that takes over, it is probably shocking all of our bladders) but it would be nice to be able to love my belly, and not feel discomfort all the time. I wish and pray that I have some good relief for at the very least part of it! If I must have symptoms... I hope they are manageable...

            I am so glad Sylvieamber that you were able to go back to how you felt before, and hopefully with the Elmiron you will just keep getting better and better. It took a couple years for me to get to where I am, so it makes a huge difference the longer you are on it. I don't expect that I will ever have a "remission" at this point, meaning no meds and no symptoms ( I would welcome it WHOLEHEARTEDLY of course) but as LONG as I can have a continued and stable "meds remission" or what I call my remission I suppose... I am good with that, if I were to be realistic. If my Elmiron is what works then so be it. My comfort and sanity is worth every penny I spend on that drug.

            With taking Elmiron, honestly, my bladder doesn't bother me at all anymore, even when it is crabby because I know it will pass, and it always does without a fuss eventually, things like being constipated, ovulating, drinking a massive cup of coffee, or a glass or 5 of wine... and stress... generally that is when I flare for a few hours, but no more than that. If I had to live with that I would be just FINE. Also, odd side note. My bladder LOVES when I do exercise.. lol.. if I am having discomfort of any kind or burning or frequency that is really annoying me, I go for a run. Poof its gone. Sometimes it comes back, but generally it makes it go away totally. I hope that this is the same with pregnancy. I like to think it is because of the increased blood flow in my pelvis, and endorphins.

            I feel so thankful that I feel good, and that Elmiron works for me. I also have taken Atarax too, when I really flare which is NEVER anymore... but that did help back when. What were your births like? I can imagine it was the best thing in the world. I really cant wait to have that I hope that I can get pregnant easy My partner wants two and so do I ... so I am fairly committed to two pregnancies, hopefully.

            It gives me hope that a lot of the women who posted during pregnancy a handful of times and even the ones who posted a bit more (and trust me I seriously have read EVERY thread in the pregnancy section thus far) lol... they do not come on anymore... or very infrequently now........ does that mean they are fine? Maybe? Maybe not.... but I like to think that there is a VERY good chance they are great and have managed just fine... I understand that people in pain post more, and sometimes I let that over take me to the point that I am crying as I read the boards... similar to when I was first diagnosed feeling so helpless. I try and put it in perspective for myself.

            Thank you so much for listening to my rant and sharing with me. Sometimes I find it really helpful to talk off the boards, so Sylvieamber and Karabie and whoever else, if you are in to chatting by email or Facebook I am totally in to that!

            Jenn
            Last edited by Jinny Jean; 12-14-2015, 07:06 PM.
            28 yrs old,

            I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

            What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

            Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



            Me in my graduation gown!

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            • #36
              Re: Does it always get worse?

              Jinny, I would be glad to talk off the boards. Can you PM me your name and I'll find you on FB

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